Table 2 Illustrative responses of healthcare professionals to three open-ended questions

Personal benefit or drawback due to the PPCT’s involvement

#10 General practitioner: Especially regarding a child with a malignant diagnosis not too many health care professionals should be involved. My experience was that the PPCT nurse caused unrest and irritation with the parents and with me, and provided inadequate advice on medication.

#27 Paediatric nurse: It is important for those involved to clearly agree who has which tasks at the start of the collaboration and to communicate with the family how the involvement is tuned.

#35 Paediatric nurse: It is good that the PPCT exists, they keep control, there is enough space for your own input and consultation.

#41 Ergotherapy professional: This year the tasks/responsibilities (of the PPCT) have become more evident. In the past, a lot was unclear whereby tasks that are in my opinion my responsibility were also done by the PPCT, resulting in discord.

#69 Paediatric oncologist: It helps if the case manager is also trained on paediatric oncology knowledge to guide these children.

Improvements for PPCT

#8 Paediatric nurse: Feedback can absolutely be improved.

#11 Professional specialised in the development of visually impaired children: Slightly faster clarification on how the contact will be when a child dies. Is there a final meeting? Now parents have to organise this themselves if they want it. It could also be arranged by the PPCT.

#14 Ergotherapy professional: Collaboration between ergotherapy and PPCT was difficult at first. Formal requests were started up by PPCT members without involvement of an ergotherapy professional. This process has improved. The lines of communication are now shorter.

#23 Paediatric nurse: I have no tips or suggestions for improvement. In the beginning we were sceptical towards the PPCT, perhaps afraid that they (PPCT) would take over our work.

#39 Paediatric nurse: Continue with what the PPCT does and try to become of even more value for both organisations and the client. Increase publicity of what you can do.

#58 Social worker: I prefer to be directly and regularly informed when any changes occur within the tasks of the PPCT.

Comments related to the PPCT

#2 Paediatric nurse: I think that for many parents and children who are dealing with several doctors, it is very pleasant to have one coordinator.

#4 Paediatric oncologist: In the collaboration it is inevitable that the moments with patients and parents decrease. I find that a pity but nobody can do something about it.

#5 Paediatric physiotherapist: I think it is nice when more is known within our practice about the possibilities of collaboration with the PPCT.

#40 Paediatric physiotherapist: The intervention seems to me very important for parents. I will keep in mind that I can also call in the PPCT. I did not realise that.

#59 Paediatric nurse: I am very satisfied about the collaboration with the PPCT. It has many advantages. Especially the short lines of communication with oncologists, as a result of which they think along to come up with solutions for certain questions about pain, sedation, etc.

#71 Paediatric nurse: Continue like this and utilise each other’s qualities, certainly do not take over. I prefer to keep this care. And I notice that there is fear of losing the PPCT.